In 2005 the Pew Research Center published a survey on end of life planning. Of the people surveyed 35% said they gave end of life planning a great deal of thought, and 36% said they gave it some thought, but only 27% put their wishes in writing.
According to a 1996 paper published by Miles, S.H., Koepp, R., and Weber, E. “research does show that advance planning catalyzes important, memorable, and therapeutic discussions between patients, providers, and family members about emotionally and conceptually difficult issues.”
What is advance care planning?
Advance care planning is the process of making decisions regarding the type of medical care you would like to receive in the event you become incapacitated and are unable to speak for yourself. The decision is based on your personal values and preferences for end of life care. Advance care planning gives you the opportunity to educate yourself about different life-sustaining treatments, deciding which treatments you would want or not want, and sharing those decisions with the people who matter the most to you. After your decision has been made, it can be put into an advanced directive which is a legal document that communicates your wishes in the event you are incapacitated. This document is used only in the event that you are unable to speak for yourself.
Summary of legal terms you may encounter in the planning process
Advance directive– is made up of 2 different types of documents, and allows you to communicate your wishes regarding future care
- Durable power of attorney for health- this document may also be called a medical power of attorney, or health care proxy. This document allows you to name the person you want to make medical decisions on your behalf in the event you can not make decisions yourself
- Living will- this is where you communicate what kind of care you want or don’t want in the event you become incapacitated
General power of attorney- lets you name the person you want to act on your behalf; this power will end if you become incapacitated
Wills/trusts- allows you to name the person you want your money and assets to go to after you die
Are advance directives permanent?
No. Advanced directives can be changed as often as you would like, and are commonly adjusted as situations change. A few circumstances where changes are commonly made are with increasing age, better knowledge/understanding of medical care options and outcomes, or worsening of a medical condition. Some decisions that often come up in the hospital setting are whether someone wants to undergo cardiopulmonary resuscitation (CPR) in the event their heart stops, intubation or ventilator use in the event they can not breathe on their own, or tube feeding in the event that a person can no longer feed themselves.
How do I start?
There are often many uncomfortable conversations that occur among families, but talking about end of life care is usually at the top of the list. These conversations are tremendously difficult for families to have due to the context of the material discussed. Although this topic is one that is difficult to venture into, it is very important to talk about before something tragic occurs.
The best conversations about difficult topics occur when families are calm, collected, and not in distress. Thus, the midst of a tragedy is not the optimal time have “the talk.” Instead start before a crisis occurs so that in the event something happens everyone is prepared because they asked the right questions, talked about wishes, desires, and are aware of how their loved one would like to spend their final days.
Who do I tell?
It is best to communicate your wishes to your loved ones, and your doctors. That way everyone is on the same page with regard to your health care decisions. Having this conversation early prevents your family members from making decisions on your behalf without knowing what you would want. If you’re finding it difficult to have this conversation with your family there are medical providers that specialize in end of life care. These practitioners are known as hospice or palliative care doctors and nurses and can help provide additional information about what to expect, which can also help you make better decisions for yourself.
Common end of life myths
- I have to be sick before I can create an advance care plan
- Advance care plans are only for older adults
- Advance directives can’t be changed
- An advance directive means I won’t get medical treatment
- If I name a healthcare proxy, I won’t be able to make decisions about my medical care while I’m healthy
The Conversation Project is an organization that was created in 2010 and is “dedicated to helping people talk about their wishes for end-of-life care.” To make the process easier they have developed a Conversation Starter Kit that is designed to help adults articulate their wishes before a crisis happens. There is also a Pediatric Starter Kit that helps parents with talking to their gravely ill child. There is also an Alzheimer’s/Dementia starter kit for families of loved ones that are afflicted with the illness. All of the starter kits are free to use.
Other resources include:
Alzheimer’s Association www.alz.org
Caregiver Action Network www.caregiveraction.org
Hospice Foundation of America www.hospicefoundation.org
National Alliance for Caregiving www.caregiving.org
National Institute on Aging www.nia.nih.gov
Well Spouse Association www.wellspouse.org